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Lupus Profundis

I have noticed an area in my chest just below my collar bone lhs, where I can put in three finger tips in a hole in my self and through the skin feel my bones, as all of the tissue and fat has gone in this area about the size of an egg. I also have a patch the same on the top of my left leg and a small dint on my left arm, with a dint forming on my right arm.

Does anyone else have these dings holes in your tissue?

What meds do you take? What is the long term prognosis?

Desley

Desley
For every dark cloud there is a silver lining!
Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

I could have sworn that I wrote a reply to this post, but it seems to have disappeared. At any rate, I simply said that I have never had this issue nor have I heard of anyone else who has this issues. Would you like me to research it for you in order to provide you with information about it? Let me know if you would like me to do that for you.

Thank you very much! I have only been able to get small amounts of info. Just saw GP with it and I have been sent for a scan to confirm what it is now four major areas. So they are doing the flat of my chest as it will be easier to do. The radiology is putting me through as urgent in the next few days. I am concerned if my fat and tissue is disappearing in these patches then my concern is this also happening to my internal organs? I would appreciate any and all info as I believe that I feel better when I am fully informed. My rhumy will see me earlier as soon as I have further info from ultra sound.
Thanks for you reply!

Desley
For every dark cloud there is a silver lining!
Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

Here is what I've been able to find. Please let me know if you need anything further or any additional information.
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Lupus profundus is the name given to lupus affecting the fat underlying skin and may also be called ‘lupus panniculitis’. it may develop at any age, including children. The face is the most common area to be affected. Inflammation of the fat results in firm deep nodules for some months. The end result is unsightly dented scars (lipodystrophy) as the fat cells are completely destroyed by the lupus.Lupus panniculitis, or lupus profundus, is a variant of lupus erythematosus that primarily affects subcutaneous fat. In nearly all cases there are deep, erythematous plaques and nodules, and some ulcers, which usually involve the proximal extremities, trunk, breasts, buttocks, and face. Lesions may be tender and painful and frequently heal with atrophy and scars. In 70 percent of patients with lupus panniculitis there will be either preceding, subsequent, or concomitant lesions of discoid lupus erythematosus. Further, lupus panniculitis occurs in two to five percent of patients with systemic lupus erythematosus . Conversely, between ten and 50 percent of patients with lupus panniculitis will have or eventually develop systemic lupus erythematosus. Most patients are adults between 20 and 60 years old, with a female to male ratio of approximately two to one. Lupus panniculitis is a chronic condition that often involves persistent lesions that subsequently heal with disfigurement.Lupus panniculitis often responds to treatment with antimalarials, such as hydroxychloroquine - aka: Plaquenil (200 mg once or twice a day). Some cases respond to a combination of antimalarials (for example, hydroxychloroquine 200 mg and quinacrine 100 mg daily) when just the one drug is ineffective. Systemic glucocorticoids should be reserved for widespread and resistant lesions. Intralesional glucocorticoids are usually ineffective and may exacerbate the atrophic healing process. Success with dapsone, azathioprine, and thalidomide has been described in isolated case reports. Surgical debridement or resection of individual lesions may be attempted when all other modalities have failed and there is appreciable debilitation.
Here is a website with pictues: images.rheumatology.org/viewphoto.php?imageId=3011221...
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Thank you Saysusie
I saw the photo but mine are more like these at this link. But deeper no broken skin over the hole but so deep that I can feel the bone under without any tissue of fat or muscle between. Eg http://dermnetnz.org/immune/cutaneous-lupus.html#prof
Does this attack the internal organs?
Desley

Desley
For every dark cloud there is a silver lining!
Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

GP sent me for an ultra sound on two major areas left leg and chest. Results are: Comment There are two subtle of altered echogenicity within the subcutaneous fat corresponding to areas of palpable abnormality ( indentation). These may represent areas of focal scarring or fat necrosis. There is no truemass identified.

So I sent this to rhumy and now await any response!

Not sure what it means but my lay interperation thinks that there is an area of fat destruction in two spots investigated. Confirming Lupus Profundis. But I could be reading this wrong what do you think?

Desley
For every dark cloud there is a silver lining!
Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

I am on plaquinel and I gather there is another malaria drug that they may put me on or metholtrexate. What are the possible side effects and which one would you take?

I don't know of any other antimalerial except for the ferocious many of us are on. As for the methotrexate it, like all drugs, does have side effects but in many cases the Lupus out of control is much worse. Most often the doctors will try steroids along with the plaquenil before moving to methotrexate.

As always, research for yourself so you and your doctor can work out the best plan for your situation

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

Thanks Marie
I was on Prendisone for three weeks and ended up having a heart spasam, gained 5kl in 3 weeks, talked the head off my husband, drove 3,500kl twice from Perth to Coral Bay and back at about 140 kl per hr, and didnt sleep to well! So I don't want to go back on that. But as you said I will discuss it with Dr, but wanted to see what you all thought? Thanks for your comments.

Desley
For every dark cloud there is a silver lining!
Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

The two malaria drugs are chloroquine and quinacrine which as I read can be used together for the control go lupus skin disorders especially lupus profundis. I think the chloroquine is plaquenil? I see the rhumy on the 8th June. Eghttp://www.lupus.org/webmodules/weba...1536&zoneid=67

Desley
For every dark cloud there is a silver lining!
Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;